Disabilities Beat Expert Panel: How the 2024-2025 NYS Budget will impact people with disabilities

In April, NYS passed a 2024-2025 budget that has many major changes impacting the lives of people with disabilities, chronic and mental health conditions. WBFO’s Disability Reporter Emyle Watkins sits down with an expert panel to break down the budget and how it will impact real people in an easy to understand way. The panel discusses the state’s attempt to save money through a major change to personal care, how the state’s focus on increasing in-patient psychiatric beds compares to what the disability community wants to see, difficulties in funding direct support for people with intellectual and developmental disabilities, and more.

Our guests for this episode include Todd Vaarwerk and Stephanie Orlando from Western New York Independent Living (WNYIL) and the Donatelli family. Todd Vaarwerk is the Chief Policy Officer for WNYIL and was on the ground in Albany the week the budget was passed with surprising changes to the state’s Medicaid-funded personal care system. Stephanie Orlando, the Chief Operating Officer for Western New York Independent Living, provides perspective on the mental health and Medicaid portions of the budget. Craig Donatelli, a self-advocate who has Down syndrome, joins us to talk about how the budget will impact individuals like him who have direct support staff. His parents, Max and Joyce, also take part in the conversation to share how they’ve advocated for increased wages for his staff.

PLAIN LANGUAGE: Who we interviewed

• Todd Vaarwerk is the Chief Policy Officer at Western New York Independent Living (WNYIL). Todd also identifies as an advocate and he uses Consumer Directed Personal Assistance (CDPA) services, which means the state pays for someone of his choosing to come to his house and help him with physical tasks, like cooking and chores. Todd has a developmental disability and uses a wheelchair.
• Stephanie Orlando is the Chief Operations Officer at Western New York Independent Living (WNYIL). Stephanie is a person with multiple disabilities.
• Todd and Stephanie both work at WNYIL, which is run by people with disabilities and helps connect people with disabilities to resources and advocacy efforts.
• Craig Donatelli is a self-advocate and works at Explore & More Children's Museum. He has Down syndrome and lives semi-independently using direct support services funded by the state.
• Max and Joyce Donatelli are Craig's parents. Max retired from Baker Victory Services and is the former Executive Director of the Parent Network of Western New York.

PLAIN LANGUAGE: Conversation highlights

NYS' budget includes funding towards housing for people with disabilities, specifically people with mental health conditions

• $43 million will be going to supportive housing units for people with mental health conditions, according to the Division of the Budget.
• Stephanie and Todd highlight the importance of affordable, accessible, and integrated housing for people with mental health conditions.
• Advocates have pushed for the Olmstead Supreme Court decision to be respected, which gives people with disabilities the right to live in the most integrated setting possible.
• Todd and Stephanie explain that finding housing for people with disabilities is still difficult, especially if you are not eligible for certain programs, or if you have multiple disabilities and are helped by multiple state agencies.

New York plans to fund "Employment First" policies

• The governor will prioritize an “Employment First” approach for the disability community with a $6.7 million budget allocation.
• Todd said that: “Employment First is meant on a state level to prioritize the ability of people with disabilities to get competitive integrated employment. This is the first time it's mentioned in the budget, in terms of a budget line and a major governmental initiative.”
• Todd explains that more work still needs to be done to ensure people with disabilities still have as much choice in where they work as people without disabilities. 
• Todd explains that we still do not know how this money will be used towards employment initiatives. The state now has to decide and plan that out fully.

No major changes in this budget to paratransit

• Upstate transit systems will get $323 million, but we saw no major changes to paratransit funding.
• Advocates expect changes to paratransit funding in next year's budget after a study on the cost of expansion is complete. 
• Todd says the study is supposed to be done by October of 2024.

The creation of a “medication aide” position did not pass in the budget

• This change would have meant a new position called a “medication aide” would have been created in long term care facilities. This “medication aide” would have been able to give medications to patients, while being overseen by a nurse. Medications are typically provided by the nurse directly.
• The New York State Nurses Association was opposed to this because they said it would make finding nurses to work and keeping them at the long term facilities more difficult.
• While this did not pass in the budget, Todd explains the state likely tried to create this role to save money on nursing staff. 
• Todd, Stephanie, Max and Craig express concern about untrained staff dispensing medication in long-term settings. They worry that people could potentially be restrained or secluded against their will using medication.
• Stephanie emphasizes the importance of long-term solutions to address nurse shortages.
• Craig and Todd highlight the importance of including people with disabilities in budget decisions. 

Direct Support Professionals did get a raise in the budget, which means their pay will go up. But it is not as much as the agencies that hire them wanted

• Craig has Down syndrome and lives in Buffalo, NY with his housemates, who all also have Down syndrome. He works at the children’s museum downtown and enjoys spending time with his housemates in his neighborhood.
• Craig has a close relationship with his direct support staff. Direct support professionals help individuals with disabilities with daily living skills and independence. Craig's staff helps with daily tasks, such as cooking and chores, and he volunteers at local organizations during his day program.
• Craig expresses concern about losing his staff due to low pay. Their pay is determined by the state budget.
• Joyce and Max describe the journey to creating this self-directed living situation for their son, including exploring different housing configurations and staffing setups.
• Max explains how direct support professionals didn’t see a wage increase for about a decade, until the current governor came in.
• Advocates asked for a 3.2% cost of living adjustment, or raise, for workers, but only received a 2.84% increase, with restrictions. They also asked for each worker to get an additional $4,000 per year in pay, but they did not get that approved.
• Todd and Max highlight the difference in pay for direct support professionals (DSPs) and personal care workers compared to other industries, and even within the care industry.
• Max expresses concern about the impact of low pay on keeping and finding staff for his son long term.

The budget included a last minute change. The Consumer Directed Personal Assistance Program (CDPAP) will be offered by only one organization

• Right now, an estimated 250,000 people with disabilities receive CDPAP through somewhere between 600 to 700 organizations or businesses, called fiscal intermediaries, according to Todd.
• In CDPAP, a person with a disability gets a certain number of hours for a personal care aide to come to their house, and help with physical tasks like cooking, cleaning and personal care. If someone is eligible for the CDPAP program, they work with a fiscal intermediary to make sure their worker is paid using state money.
• Todd explains the state has been concerned about the growth and regulation of this program for a while. 
• Advocates were concerned about this change, and went to Albany to ask the state to include the organizations who created the program in this new change.
• Todd explains that advocates are concerned about a loss of choice, since they wouldn’t be able to choose an agency based on cultural or language needs.
• Todd says advocates convinced the state to make some organizations run by people with disabilities and certain culturally-focused organizations to work under the main fiscal intermediary. 
• If organizations take legal action against this change, it may not happen for a while, according to Todd.

The New York State budget focuses on increasing psychiatric beds, but as Stephanie explains, many people in the disability community would rather see a focus on support in the community

• The budget includes $55 million so 200 new inpatient psychiatric beds can be added to state-run psychiatric hospitals, according to the Division of the Budget.
• Stephanie expresses that many in the disability community have concerns about the addition of psychiatric beds in the state budget. She explains that there is a continued push for a community-based approach to mental health care, rather than institutionalization.
• Stephanie argues that the budget focuses on adding hospital beds instead of investing in comprehensive mental health programs that help people when they first start to show symptoms of a mental health condition, rather than when they are in crisis.
• Stephanie also says there is a lack of transparency in mental health hospital outcomes.
• Stephanie and Todd discuss alternative models for mental health care, including peer-run respites and early intervention programs, such as On Track New York for first-episode psychosis. They say these programs are more effective and person-centered than institutional care.
• Todd explains New York State's "safe discharge law" and challenges faced by people with physical disabilities in nursing homes and how that might apply to mental healthcare as well. 

The budget does include funding for community-based initiatives through a federal waiver program (the 1115 Medicaid Waiver program)

• Stephanie highlights the importance of community-based supports for people with disabilities, including new social care networks being developed in New York.
• Todd explains that a waiver allows a state to try new approaches to healthcare, with support through funding from the federal government.
• This means some programs will be able to access Medicaid funding to support what they do, when they couldn't before.

The expert panel has mixed feelings about the budget

• Todd is cautiously optimistic about the budget, because people with disabilities advocated and saw some changes where they asked for them. But going forward, he wants to see people with disabilities more fully included in the process.
• Stephanie is mixed on the budget, feeling it's in some ways reactionary and doesn't engage all the people it impacts. She does say there were some positive changes included based on what youth said they wanted to see. 
• Craig expresses hope for the future, but worries about his staff being able to continue to work with him. 
• Joyce is concerned about the budget, but is hopeful because funding for direct support professionals did not get completely cut. 
• Max feels hopeful about efforts to increase funding for disabilities services, but expresses concern about current services not having a person-centered approach.

FULL TRANSCRIPT

Emyle Watkins: I'm so excited to be joined in the studio today by a great panel of experts and people with lived experience to talk about this year's budget that recently passed. First, I want to introduce Todd Vaarwerk from Western New York Independent Living. Todd, can you tell us a little bit about who you are?

Todd Vaarwerk: Well, I'm the Chief Policy Officer at Western New York Independent Living. I'm a person with a developmental disability who's worked in the independent living field for 30 years.

Emyle Watkins: And Stephanie, you also work at Western New York Independent Living. Tell us a little bit about you.

Stephanie Orlando: Hi. I'm a person with multiple disabilities and I am the Chief Operations Officer.

Emyle Watkins: And tell us a little bit more about Western New York Independent Living as well.

Stephanie Orlando: We are a family of agencies including three independent living centers which support people with disabilities in living a full inclusive life in the community.

Emyle Watkins: Great. And we've also got Craig Donatelli and his parents, Joyce and Max.

Craig Donatelli: Yep.

Emyle Watkins: Craig, tell us a little bit about who you are.

Craig Donatelli: I am Craig Donatelli. I am proud to have Down syndrome.

Emyle Watkins: And you work at the Children's Museum downtown?

Craig Donatelli: Yes.

Emyle Watkins: And Max and Joyce, I know you've done a lot of advocacy work. Tell us a little bit about that.

Joyce Donatelli: Go ahead.

Max Donatelli: As an advocate, I've been involved in advocacy probably even before Craig was born, but it got probably more extensive and more involved since Craig was born with Down syndrome 36 years ago today. And I worked at Baker Victory Services. I retired after 42 years working with high-risk kids and families, kids in foster care, and both residentially as well as preventive services and also the Bridges to Health program and also former executive director of Parent Network of Western New York. We restarted that organization back in 2001 after having to close it because of funding. And involved in advocacy for many years and really trying to help to make positive system changes. And right now [I've] been involved with a friend of ours, BJ Stasio, trying to help to teach the Art of Advocacy to others that want to really learn how to become more effective advocates.

Emyle Watkins: That's great to hear. And again, happy birthday, Craig.

Craig Donatelli: Thank you.

Emyle Watkins: Super excited to have you here today. I want to start by saying this budget seems to have quite a mix of results for the disability community, from what I've been hearing, and I kind of want to just dive right into one of the biggest parts of the budget, which was housing. I noticed that $43 million will be going to supportive housing units for people with mental health conditions. Stephanie, I know that Western New York Independent Living works a lot with people with mental health conditions in making sure that they have the resources they need to succeed. What have you been hearing about how this might impact people?

Stephanie Orlando: Well, I think it is needed. We have such a lack of affordable, accessible, integrated housing and for this population it's only a portion of our disability community, but absolutely important to have. And the thing that really stands out for this is that it includes single room occupancy and being able to get housing in non-licensed Office of Mental Health facilities. So that means you can get assistance to get an apartment in the community where maybe you would be in a building with other people that don't have disabilities or mental health conditions. So that's really important, to remain integrated in part of society where we're not segregated into specific housing settings, but have access to housing and the supports we need in those housing settings.

Emyle Watkins: That kind of sounds like it shows New York making more of that move towards the Olmstead decision and respecting that decision to, the Supreme Court decision to, allow people with disabilities to live in the most integrated setting possible.

Stephanie Orlando: Absolutely. That really is the point, and I think that advocates have really worked toward that in building a better understanding within our government of why that is important. I mean because we don't want to also be limited to what our community should be and where these houses are. And by funding this type of model, we're able to stay in the community of our choosing. So it doesn't matter where that residence is in, let's say Buffalo, you would have more opportunity to go into a neighborhood that you want to live in that maybe your family and other support system is.

Emyle Watkins: Todd and Stephanie, obviously WNYIL does a lot of work to help people with housing, getting connected to housing. What are the issues that currently exist right now? Do we see any other ways the budget is helping remedy those issues?

Todd Vaarwerk: Well, remember that this is part of a larger, a much larger, push on housing that came out of the Governor's State of the State address. And while we're addressing people who are served by Office of Mental Health and what we refer to as an “o-agency”, right, we're dealing with people that are being served by the o-agencies, but the people that aren't are still in a housing crisis problem with not being able to get accessible housing because locally all of it's being used and the housing that you can get is definitely priced out of somebody who doesn't already have a housing support like a federal housing choice voucher or something from one of the state waivers.

So like we can say in a lot of areas of the budget, this is a very good initial investment in the most persistently homeless population that the state says they deal with. But we can't just let it be the only step. So we are advocating with local politicians to talk about the general housing plan, including provisions for accessible housing, so that there's accessible housing to be able to use the money that they're putting aside in this program.

Emyle Watkins: And just to clarify for our listeners, those o-agencies are the Office of Mental Health and the Office of People with Developmental Disabilities or as we call it OPWDD.

Todd Vaarwerk: And the other one, the Office of Alcohol –

Stephanie Orlando: – Addiction Services and Supports.

Todd Vaarwerk: Addiction Services and Supports.

Stephanie Orlando: Yeah, they changed their name not too long ago.

Emyle Watkins: So the o-agencies, but obviously not everyone with a disability is served by an o-agency.

Todd Vaarwerk: Correct.

Stephanie Orlando: And some it becomes a barrier of who's the primary, who's taking the lead. And so let's say you have multiple disabilities and are served by both agencies. Sometimes that could be difficult in getting services at all because it's a lot of finger pointing going on.

Emyle Watkins: And housing was one major part of the budget, but I know that employment was another major highlight for the Governor. And New York said that they are becoming a quote, "Employment First” state for the disability community and have contributed $6.7 million in the budget for that. Todd, tell us a little bit about what that means for the community.

Todd Vaarwerk: Well, Employment First is meant on a state level to prioritize the ability of people with disabilities to get competitive integrated employment. This is the first time it's mentioned in the budget in terms of a budget line and a major governmental initiative. But Employment First has been around for a while and hopefully with the amount of money they've placed toward it and the amount of planning they're going to need to use to spend the money, we're going to get some more substantive results in being able to improve employment outcomes because while we've been saying Employment First for a whole bunch of years, we really haven't been building that into corporate jobs beyond entry level, maybe maintenance jobs or jobs in government.

So we're hoping that this model can build into something where there's a genuine choice of jobs, especially since we're now in a deficit for hiring folks. Everybody's looking for people to fill a job. People with disabilities are great for that. So here's again, the government making a good first investment to say, all right, if we have all these jobs that need to be filled, let's put some money behind making sure that people with disabilities can get an equal shot at them.

Emyle Watkins: And do we know how that money will be used to achieve that?

Todd Vaarwerk: Not yet. Budget language has to lead to regulatory language before we realize how they're going to spend the money.

Emyle Watkins: And Max, you worked with people with disabilities for a long time. What did you notice as far as their employment opportunities and how do you think this will make a difference?

Max Donatelli: I think it would be helpful, and I agree with Todd, that there's a real need for this. The unemployment rate for people with disabilities has been way too high for way too long, and there really needs to be more emphasis on really trying to encourage and have people with disabilities be able to move into jobs. And one of the things that I know that some of the local agencies here in Western New York, including Explore & More where Craig works, they gave him an opportunity as a person with Down syndrome to work. Craig works there right now, he's working on a part-time basis, but really as Todd mentioned, the people with disabilities can be some of your most reliable and motivated people to be hired. And I think a lot of times because of stigma, those opportunities are not as readily available as they really need to be. That's why it's good that the state is going to be putting some funding into this.

It'll be interesting to see how they're going to use that money in order to really provide incentives to be able to have people with disabilities to become more employable so that we can get more people in the workforce and be productive. And certainly it really adds to a person's quality of life and their self-esteem when they're working and when they feel productive just to see Craig live semi-independently from Joyce and I. It happened when, I have the cameras where Craig [lives] and I see him in the morning, he gets himself ready, he is ready, he gets up at 5:30 in the morning, gets himself ready, takes his shower and watches the news, gets his breakfast, and he's all ready to be able to get on the paratransit when it comes for him. And he hasn't missed that at all. I mean he's been, and he doesn't need a staff member to do that. He does that on his own. He's motivated because he likes what he's doing.

Emyle Watkins: Craig, do you feel like people assume that you can't have a job and get up and get yourself to the job like anyone else just because you have a disability?

Craig Donatelli: Well, actually I have disability because to help them to get their dreams, hopes in future, that someday I'll have those.

Emyle Watkins: So someday you'll help other people have the same opportunities that you have.

Craig Donatelli: Mm-hmm.

Emyle Watkins: Do you feel like people are surprised, though, when they find out that you have a job and you have all these opportunities and live on your own?

Craig Donatelli: Because I have staff who also help me, to help me with skills there and then after that I could someday I'll be with again to live with, I'd be in another home someday.

Emyle Watkins: Yeah, that makes a huge difference. My dad is also disabled and so he taught me a lot of the skills that I need to be able to live my life independently with a disability. So I understand how important that is and I think that you make a great point that there are a lot of perceptions about people with disabilities and what we're able to do, what kind of jobs we can do. I know even as a journalist, people have told me that they're surprised I'm a journalist with a disability.

And so it's important that we talk about these issues like employment and housing, but I also want to talk about something that you mentioned, that, Craig, you use every day to get to work, which is paratransit. And advocates locally have been pushing to get paratransit expanded because right now it only goes three-fourths of a mile beyond a mainline bus route. And in Western New York where we're not all close together, it doesn't always reach the people who need it. And this year we saw $323 million allocated to upstate New York transit systems, but no word on any major changes to paratransit.

Todd Vaarwerk: Now there's a reason for that, because in last year's budget, or sorry in the 2022 budget, they placed three quarters of a million dollars into a fund for a study to be done by an upstate transit authority about the cost of expansion for paratransit and they gave the money to the Niagara Frontier Transportation Authority who is currently pursuing the study. The study is supposed to be done by October of 2024. So with regard to the next budget, we should be able to have a number that's workable and professionally and peer researched so that we can go back and say all right, for the upstate transit authorities separate from the MTA and everything that they do because upstate transit is funded differently than downstate transit is. Being able to have a number allows us to get into that conversation about how much paratransit expansion the state can afford.

I don't think that it was a failure of the governor's part to consider that, more than I just think that they're waiting for results. Now that having been said, as we move forward we know that the major guy that pushed the study, Tim Kennedy, just won a position in Congress and one of the things that will be leveraging hopefully from his office is continued commitment on the federal side to bring in some money that the state could then match. So if they say that expansion in the region for paratransit is $20 million, well then we can ask the Feds for $10 million and then only have to worry about the NFTA matching another $10 million, potentially, with state allocation.

Emyle Watkins: So, no surprise that there wasn't much on paratransit in this year's budget, but advocates are expecting something next year.

Todd Vaarwerk: Yes, because we're waiting for the final results of the study. They just got done with what's called the impediments review, which is, using the NFTA as an example, where people can't go that they want to go. Now they're going to be getting into the cost cycle.

Emyle Watkins: Speaking of potential cost saving measures that were in the budget, I noticed that Governor Hochul wanted to have a change that would've allowed medication aides, as they're called, to administer medications in long-term residential settings, medications that from my understanding, would normally be administered by nurses. The New York State Nurses Association was opposed to this because they said it would hinder recruitment and retention of nurses. And so it did not pass. But I'm wondering from the perspective of the disability community and anyone who'd like to answer this I'd love to hear your thoughts. If this was to happen, if we were to have medication aides in long-term [care] settings, how would that impact day-to-day lives for people with disabilities?

Todd Vaarwerk: Well, it's really interesting to kind of understand where that kind of idea came from and what the ending result is because you're talking about people in settings, so we're saying we want to be able to have a specific type of person who isn't a nurse who can dispense medication. That, as a person with a disability, that concerns me greatly because we have a lesser trained person dispensing medication that might not necessarily be doing it in the best way. One of our big concerns about people in institutions is: is medication being used for improper restraint and seclusion? Are people being medicated when they don't need to be just out of convenience or concern for safety with regard to the facility? While we understand where there might be a fiscal impact statement for the state in terms of how much nursing costs, nursing also comes with a high value of education and a high value of ethic to prevent that kind of thing from happening.

Max Donatelli: I would agree. I mean I definitely would agree. Having worked on a residential situation myself a number of years ago, we always did have nursing staff there and I would agree that they definitely have the high qualifications as well as the ethical standards that they have to meet. Even if there were to be somebody at a lesser pay grade so to speak, they may not have that level of expertise that's needed. And I think that really needs to be really fleshed out before something like that really gets pursued because it really could go down a road that could be problematic for all the reasons that Todd just mentioned.

Stephanie Orlando: I think a lot of these band-aid approaches to problems that we have, like we have a shortage of nurses, so let's bring in someone less qualified. It doesn't increase our quality of care or what it's like to live in these different settings and we have to do better than that and figure out a longer-term solution to maintain the quality. So I think it makes a lot of sense what the union stood for to say no, this is a nurse's job and we have to think about the unintended consequences of having less trained people who are put in long-term settings that might be more of an institutional setting where they have to maintain the environment. So again, that idea of over-medicating or using different medications, we would rather have the more qualified person and not a band-aid solution to this problem.

Max Donatelli: The other thing too, and that's to separate out too, that being able to dispense medications is different than ordering the medication. So if somebody is there and they're dispensing medications that have been ordered by the professional, that's okay. I mean I don't see that that's a problem as long as they're trained and they know what their specific job is as related to that. Because there is training that goes with paraprofessionals where they do the dispensing of medications, which is different than actually ordering them, prescribing them and either on a PRN basis as needed in a situation during a person really going through a very difficult time, it being explosive and may needing a PRN. There really is more of a need in those situations if medications to be used, it needs to be by a trained professional in those kind of situations so that there isn't the danger of over medicating or potentially something where it could be really dangerous for that person getting a medication that they may be not, should not be getting.

Emyle Watkins: Craig?

Craig Donatelli: I want to say that I am very lucky that I don't need a nurse to walk in and to walk into my house because I always take my medicine to be independent. And when people are out there and like into Willowbrook, people are scared. They are not good. But with that is… I advocate for them to be out and be freedom and to get a job like I did.

[Context: Willowbrook State School on Staten Island in New York was an institution for people with disabilities that operated from 1948 to 1987. Willowbrook was, according to the College of Staten Island, “the largest institution in the world for the treatment of people with developmental disabilities, separating them from the mainstream of society.” Willowbrook caught national attention for how disabled people were warehoused, abused, neglected and not provided opportunities to reach their full potential. Advocacy by Willowbrook survivors and their families led to the closure of institutions and a move to community-based services and integrated community living.]

Emyle Watkins: Yeah.

Todd Vaarwerk: Craig makes a very good point about how the value of nurses actually increased, coming to this point, because of the event of Willowbrook. Because part of that investigative report was untrained people making medical decisions that created the horrific conditions in Willowbrook. I think it's really important though that we build on that and remind, about everything in this budget, what we're shocked about is they come up with these ideas and they're negotiated in the budget and for a lot of them, whether we win or lose, we found out after the fact. Nobody from the health department came to a group of people that were living in these facilities and saying, “hey, how's that nurse working for you?” Other than “we don't have enough nurses, we need to be able to make sure medication is dispensed,” who else did they talk to before creating this idea? “Nothing about us, without us,” needs to be something that includes the New York State Budget Department when they're coming up with a budget design and the subsequent departments.

Emyle Watkins: Craig, I think you also make a really important point about quality of life and how a lot of what we're talking about with this budget ultimately impacts the quality of life of New Yorkers with disabilities and chronic health conditions and mental health conditions. And I think it's a very natural transition into something that, as long as I've been a disability reporter, has always been a hot topic in the budget and that is the funding for direct support professionals, the exact kind of workers that provide support in the house you live in, Craig.

Craig Donatelli: Yeah.

Emyle Watkins: Tell me a little bit about where you live.

Craig Donatelli: I live in Buffalo, New York. It’s a beautiful street. It's safe and we do a lot of walking, bike rides, up and back. And also that I got a group of staff: Colin, Phyllis, Debbie, Lisa, all of them. And so Sam and people at my [day] program as well.

Emyle Watkins: Sounds like you have a very, I don't mean to interrupt you, but it sounds like you have a very close relationship with all the staff.

Craig Donatelli: Yes. Because if I had to say, with people with disabilities, they have a home like I have. It's like to lose them, to lose staff here, in [day] program, to lose them, there is no staff and there's no money for it.

Emyle Watkins: What are some of the things your staff is able to do for you when you’re home?

Craig Donatelli: One, when it was my day to cook, it was Phyllis there. She helped me with cooking. It was Debbie, she helped me with some things like Phyllis does. So does Colin and so does Lisa and other staff do too. And People Inc, wonderful staff there. And there's Sam, Mary Jane and people there, helping me with being independent and also being on things there. They're doing… growing… like today with my mom, her Mother's Day present. I had a nice, a flower, that I made with [day] program and the program is. I have volunteering. One, I volunteer at the Goodwill store. I volunteer at the one called, the one called Meals on Wheels. And they say, what are your favorite [volunteering]? My favorite, Meals on Wheels are my favorite one.

Emyle Watkins: So, it sounds like your staff helps you do all the things that you know you're able to do. They're just there to assist you and help you through it.

Craig Donatelli: Yes.

Emyle Watkins: And you live with other housemates who have similar disabilities, right?

Craig Donatelli: Yes. Also, I've been there for over 10 years, no, 11 years now. And it's with seven guys.

Max Donatelli: Six guys.

Craig Donatelli: It would be six guys. One is me and another one was Patrick, William, David, Mike. David and Mike and I were at City CAPP [day program] a long time with them… group. And then Patrick, he works somewhere independent, and David, he works at the nursing home. He's also independent and so is Mike. Mike, David and me, will go to City CAPP. And City CAPP is helping me with, they help with, like today… Friday and Tuesdays I go on program. And I like it there. Because with disabilities, they are pushing with the budgets… are that I am a little bit scared that to lose them.

Emyle Watkins: Yeah, and we're going to talk a bit about that because I think that that's a really important part of the budget. Before we get into talking about numbers and specifics, Joyce and Max, I'd love to hear how you guys put together this home because I know it's a unique setting that you worked on with a lot of other families.

Max Donatelli: Yeah, and certainly Joyce, we did this together.

Joyce Donatelli: Together.

Max Donatelli: This goes back many years, actually beyond the 11 years that we're going to be celebrating 11 years this June where Craig lives in a self-directed living situation. It is different – it is not a group home. It's not a certified group home where Craig and his housemates live. We started the journey to be able to look at, we looked at various settings and Craig has David who he calls his honorary brother. They talked about wanting to move out after they got to know each other. They had sleepovers and they talked about wanting to have their dream house.

Joyce Donatelli: They met in 2002.

Max Donatelli: They met in 2002, so this goes way back. And then we hooked up with some other families that their sons were also looking for something as well. So we decided, well, let's explore this self-direction route. These guys do know each other, they get along. Let's see if we can get something together. We looked at a couple of agencies, we interviewed them and decided to go with Aspire of Western New York. We worked with a person by the name of Helen Hanes who was very helpful in showing us a lot of different kinds of housing configurations, whether it be apartments, whether it be a duplex, whatever it might be. And we decided that a family home would be the better direction to go. We looked at probably 14 or 15 different places and then worked with to develop, a person from Aspire, who helped us to look at the different places where we could actually, they could actually buy. We as parents of the young men who are all right around the same age, which is something else that's a real benefit because Craig lives with guys, I think the largest number… they're within five years of each other.

Joyce Donatelli: I think the oldest young man is 38. And like Max said, they all have Down syndrome, everyone has their own room and so they have their own privacy and we do have cameras and that covers the kitchen area and the dining room and the living room.

Max Donatelli: For night.

Emyle Watkins: For when there's not staff there.

Joyce Donatelli: For when there's not staff there. Well actually that's a different issue too because sometimes it's not that way. When the fellas first moved into the home it was 24/7 there was staff there, but then that wasn't working out too well because there was no –

Max Donatelli: – ability to pay for overnight staff because it has to be face-to-face –

Joyce Donatelli: It has to be face-to-face.

Max Donatelli: – in order to get funded for Medicaid. So it was a real drain on the budgets because the overnight staff were, we couldn't bill for them.

Joyce Donatelli: So then we went into looking for cameras to see if that would work. And so right now we have a camera. We had it for maybe four years, maybe four years.

Max Donatelli: About four years. And we have them on our phones.

Joyce Donatelli: Each family has one person, usually everybody has two phones in their home, husband and wife, but only one phone can have her family the ability to see.

Emyle Watkins: You have the phones, sorry, I don't mean to interrupt you, but you have the phones and the cameras, so at night that's covered, but during the day you have staff. Tell me about those staff, are they all direct support professionals or some consumer directed?

Max Donatelli: Yeah, they're all direct support professionals. I mean, they are working with Craig as opposed to a personal aid which would be working for them, because these guys are all independent in terms of mobility. All of them… none of them have ambulatory issues currently. So the staff basically are there to help them with activity of daily living skills, help them with independence. When they're working with Craig, they're going to look to really see that he's learning things about whether it's cleaning his room, cleaning the bathroom, cooking, that he's actually gaining skills so that he can become more independent. They also take them out in the community too. None of the guys are driving right now, so they need to, in order to get out in the community, the staff take them out. We are very fortunate, shout out to West Herr who helped donate a van for the guys, which was very, very helpful because they many times go different places because it is all self-directed. So they all don't travel together as a group all the time. Occasionally they do, but many times because they all have different interests, some are in sports, some are in other kinds of things.

Emyle Watkins: Just so people don't get confused. Everyone in this house who is staff, they're direct support professionals.

Max Donatelli: Correct.

Emyle Watkins: Direct support professionals help people just do the tasks they can do, but that just might maybe need assistance or kind of direction through it. But self-directed care is a little bit different, we'll get into that more later. That's more of self-directed personal care. So like you mentioned, helping someone who might have a physical disability with tasks around their home, cleaning, cooking, bathing, those kinds of things. So there's a difference there and that's important when we talk about the budget, right.

Max Donatelli: That's a personal care aid, yes.

Emyle Watkins: Yeah. And for these direct support professionals that provide services to so many New Yorkers, they didn't see an increase in their wages for I believe 10 years, correct?

Max Donatelli: That's correct. That's one of the things that was really problematic and it's been an advocacy issue that we've been involved with probably over the last 15 to 20 years, really pushing to try to help to get pay increases for the direct support professionals. They're really doing some really necessary work and we really need to have quality people that are in those positions. And having them barely above the minimum wage is really in a lot of ways wrong and that's what we've really continued to push for. We asked the agencies that provide these services across New York State, the not-for-profit agencies, they have an organization, New York Disability Advocates, and what they asked for, this provider organization asked for, a 3.2 [percent] cost of living adjustment just to be able to increase those wages enough to start to make them more marketable in terms of being able to attract and retain good staff, quality staff. Unfortunately, we only got about a 2.84 percent cost of living and also was asked for was a $4,000 wage enhancement, which did not get into the budget. So we didn't get, the agencies didn't get what they really needed.

Todd Vaarwerk: Max being an expert on the numbers, we want the listeners to kind of understand why the numbers are important, why 2.8 is a problem versus 3.2 because somebody's going to say, “well, you got most of your cake, you just didn't get all of it.”

Emyle Watkins: Well, and that 2.84 is with restrictions as well.

Todd Vaarwerk: Correct. We need folks to be able to recognize the value, and this goes to the CDPA [Consumer Directed Personal Assistance] conversation we're going to have in a minute, but the value of the direct support professional, the value of the community care worker that assists the person with the disability, you have to compare that with everywhere else they could go potentially to work. And what we're doing is we're chasing a situation where you could either do the reasonably difficult but very rewarding work of working with Craig and his housemates, or you can make a buck fifty-five more an hour starting at Target.

Max Donatelli: And I think that's the big discrepancy. The other issue too is that the state workers last year got a 12.5 percent increase in cost of living that they were able to negotiate and they're doing wonderful work.

Todd Vaarwerk: And Max, at the same time, the voluntary agencies got how much?

Max Donatelli: They didn't get, last year it was, we got 3.2 [percent].

Emyle Watkins: And just to clarify for our listeners, everyone in New York state who receives direct support or personal care, all of that comes through Medicaid dollars. So basically the state Medicaid budget is what determines those rates that people can be paid, but that money might either go through a state agency that hires DSPs or it might go through a voluntary agency like Aspire or People Inc. And sometimes the way those things are funded can differ.

Emyle Watkins: And Craig, with these agencies and these organizations that we're asking for more pay for your staff, with them not getting the rate of pay that they were asking for, are you worried that'll impact the staff who work with you now?

Craig Donatelli: Yeah, because right now they're helping me with reach my goal, one is my dream and my future, my staff help me. Yes, and my family and the rest of the family.

Emyle Watkins: And it has to be hard when those staff change over too, right?

Craig Donatelli: Yes. And to help me with, they're helping with all the way up to the ladder.

Joyce Donatelli: Helping you move up the ladder of life.

Max Donatelli: And I think one other thing too that we didn't mention is that the way that this model is, that as much as we've been able to help them to become as semi-independent as possible, when staff aren't there and we have shifts that are open, the families are the backups.

Joyce Donatelli: We're the backup. That's been very concerning for the future.

Max Donatelli: Yes. And particularly right during COVID we lost a number of staff and we as families had to pull a number of those shifts and doing them as fairly as we could. But still, I mean right now Joyce and I are mobile. All the families right now are mobile, can get around, can get to the house. We're the farthest away, we live 20 miles away. We're in Hamburg, he’s in Amherst. But it's a challenge and for the future, that's one of the reasons why we're looking down the road. How is this going to look five, six, ten years from now? How are we going to make sure that there's going to be staff that are going to be able to help during times when we're not able to do that? And for the future we definitely have very serious concerns and that's why we're doing a lot of advocacy, as we can at the state level.

Max Donatelli: I do want to make sure that I also say too, as much as this, we were disappointed with the not getting as much as we really wanted to see for the staff this particular budget year, however, we're very happy with the way that our Western New York legislators really advocated for us, and Craig has asked his assembly person, Karen McMahon, to be on his life plan meeting, so she gets a real close eye view of these issues and can really help being on the disability committee in the assembly. She's been very helpful in advocating for some of these kinds of issues. As well as, I want to thank our governor as well, knowing that this is an issue that is important and we just want to make a pitch to really try to see that hopefully next year we're going to get closer parity with the state workers because what they're doing is extremely valuable.

Emyle Watkins: While the direct support professionals did get at least some sort of pay increase, I know that consumer directed personal care assistance, they did not see a cut, but they didn't see an increase and they also saw a major change. Todd, tell us a little bit about what happened to CDPAP, as we call it, or Consumer Directed Personal Assistance Program in the budget.

Todd Vaarwerk: Well, real quick, I just want to follow up on something that Max said about the success of our region in terms of being able to promote these initiatives being about the members of the legislative delegation. They really are supportive of broad-based disability initiatives. The reason why I deliberately say that is that CDPA, Consumer Directed Personal Assistance, it's a program that the state's been very concerned about for a while because of what they referred to as explosive growth in a three to four year period from 70,000 people to about a quarter of a million people. Now we can have an argument about where we think that growth comes from, and any of your listeners who listened to me talk about the budget last year, I think I gave, go back and find it in the archives, but when we talk about CDPA this year, what they did was they said, we're going to cut out all of the fiscal intermediaries, and this is the way that all of the consumer directed and even the self-directed services work. We work through intermediaries, we work through agencies that act as our representative, and in the CDPA position, they're the employer of record for the aide that comes to my house.

Emyle Watkins: They're the ones who disperse that money from the state.

Todd Vaarwerk: Correct, right. For the listeners to know, I'm a person in a wheelchair, I use 35 hours of consumer directed personal assistance services per week. They come in to help me with the physical things necessary to help me get ready for work, keep my place clean, get me the drugs that I need on time, all that stuff. But it's not tied into as detailed a plan as the direct support professionals have. They do a lot of the same kind of work, and they get paid kind of the same amount that the direct service professionals get paid, but the state is worried about cost. State is worried about consumer directed being a nine billion dollar industry.

Todd Vaarwerk: So coming out of the Governor's 30-day amendments where they just stuck a whole bunch of things in that says, “we need to reform this program. We're going to give the Department of Health carte blanche to fix it.” Well, we're a little concerned about that because [the] Department of Health doesn't necessarily come to the disability community and say, “hey, how's this fix going to affect you?” They issue an emergency regulation and before you know it, no aide would be able to work more than 40 hours a week. So we fought that in, for the listeners, what are called the one house budgets. The governor comes out with her budget and then the assembly comes out with their budget and the Senate comes out with their budget and all those budgets have colors. And then –

Emyle Watkins: – And then you have the amendments, and then you...

Todd Vaarwerk: Well, three people come in a room and then they agree on one budget, and that's what the budget language is. At some point in this budget, they decided in discussion that they were going to have one fiscal intermediary statewide for all 250,000 people in the program. Now, the reason why they think that this is going to save money is because currently the number of fiscal intermediaries statewide is between 600 and 700. They're not even sure about the exact number because according to their research 30% of those people don't fill out cost reports as required by law.

Emyle Watkins: And to be clear, there's been a known problem with these fiscal intermediaries. I mean, there was a report, I believe in 2018 from the Inspector General of the Department of Health and Human Services, and they basically said, “New York State, hey, you've got to give us $74 million in Medicaid [funding] back because we think it was reimbursed incorrectly through these FIs.” So we know that there has been a challenge with regulating these FIs, but going to a single fiscal intermediary, how is that going to impact disabled consumers like yourself?

Todd Vaarwerk: It takes away choice. Imagine if we said to the DD [developmental disability] families on self-direction, “hey, all of a sudden you're not going to be able to deal with that local agency that helps you develop your budget. We're going to give a gigantic state contract to an out of state guy who's going to come in and manage that budget for you.” They're based in California or Pennsylvania or West Virginia. Now all of a sudden they've got a contract with the state and they're going to manage the services for you.

Emyle Watkins: And to be clear, in the budget language, it says that that new FI does have to be someone who works in at least one other state.

Todd Vaarwerk: Now, what we were able to do is we were able to remind the legislature about the disabled community that created this model. It came from the independent living centers and an organization down in New York City called Concepts for Independence, where we don't talk about whether or not you're hiring your relative to come work for you. We're talking about who you choose to hire so that you can stay independent in your home and proceeding with the goals that you choose for your life. A bunch of the other fiscal intermediaries just care about, and they advertise it, “you can get a relative to come work for you and Medicaid will pay for it!”

Joyce Donatelli: All the commercials.

Todd Vaarwerk: Oh, yeah, all the commercials.

Max Donatelli: Get instantly paid.

Joyce Donatelli: Instantly paid.

Todd Vaarwerk: Instantly paid, right. So here's the state trying to deal with what we might refer to as bad actors, although every circumstance is different, and they come out of this thing saying, “well, there's going to be one fiscal intermediary.” Even we in the independent living community know that the model needs fixing, right? And the cuts should not come from me or my hours or the wage for the aide that gets paid to help me. That's one of the reasons why we're arguing about the model being more efficient is because we want that administration money, maybe to more go towards supporting salary so that that person can still work for me and not take the job at Target.

Stephanie Orlando: I just wanted to add, when you're thinking what it means for a person with a disability to go to a single FI, it's also that workforce issue. So you're looking for someone to come help you. They're getting paid a low rate. Maybe English isn't their first language, maybe their literacy isn't at a high level. When you have a local fiscal intermediary, they're there to support that workforce. So for instance, New York State requires sexual harassment training. We have to at Western New York Independent Living, we are a fiscal intermediary, we're preparing for that right now. We're preparing for language access, we're preparing to provide it in multiple formats, and we're preparing for a lot of people coming to our office saying, “I got this letter, I don't know what it says.” And maybe coming to us speaking another language other than English. So it just compounds the problem in the workforce issue that now you have someone far away that can provide you that local support to help you with the people that are there available to you to be your staff, your worker.

Emyle Watkins: So just to kind of summarize in simple terms, because I know a lot of this can get confusing when you're hearing all of these terms for the first time, essentially a person with a disability like you or me, Todd, we could hire someone else, a friend, a family member, someone we know who lives down the street. If we have a self-direction budget, we can say, “hey, I want you to come work for me. Go to a fiscal intermediary like Western York Independent Living, say I want to hire them.” Then Western York Independent Living would pay them based on the money I have in that budget from New York State and the hours that they can work for me, and they get support from agencies like WNYIL who are culturally knowledgeable about the areas that they're serving.

Todd Vaarwerk: That's almost right. The budget part is more on the DD [developmental disability] side of the aisle. Consumer Directed doesn't come with a budget. You're authorized a certain pool of hours a week because the medical professionals at the county or the insurance company have determined what is medically necessary to keep you out of a nursing home. Note the way I said that, that's very important. The medically thinks necessary to keep you out of a nursing home. For example, in my case, they've determined that's 35 hours a week. So the person I hire will go to an agency who will then manage the money needed for that 35 hours a week and do everything else that the state requires in order to make sure that that aide can continue to work. They do the medical monitoring to make sure, because aides every year have to certify they're medically capable of performing tasks. They do the corporate compliance to make sure that the aides are only performing the tasks that are listed on the care plan. They're doing all of those other things that a traditional home health agency would have to do.

Emyle Watkins: And so now we have this issue where you have these kind of more commercial companies trying to come in and take part in the system that was created by these agencies that are run by, I mean independent living centers are run by at least 50% people with disabilities.

Todd Vaarwerk: That's right.

Emyle Watkins: So now we have this issue of there's too many organizations in this marketplace. Now, from my understanding, advocates were able to get in the budget that there will be a single FI, but independent living centers like yours and a couple culturally focused FIs will remain as subcontractors.

Todd Vaarwerk: Correct. And I have to say, because I want your listeners to know that advocacy on disability issues is sometimes really complicated. We were really only successful in doing that based on the power of the consumers that came and also being able to get support from the major healthcare union in New York. So this is a whole thing where my life could have substantially changed literally on a week's notice, right, because the proposal got announced by the governor on a Monday and was in the final budget language on Friday morning. This is how quick the New York State budget works, and it was because of our local delegation, especially the upstate delegations, and our work with all of the players to be able to turn the train just a little, just to make sure that there is subcontracting language and even that language is as of yet unclear. So we're waiting for budget language to turn into regulatory language.

Emyle Watkins: So as of right now, we know that these changes are coming and we don't fully know what they'll look like in the end?

Todd Vaarwerk: The CDPA changes, I'm going to be really honest, I think there's going to be some legal challenges to them. So while they're coming, I don't think they're going to be coming as fast as the state would like them to.

Emyle Watkins: So something to keep an eye on.

Todd Vaarwerk: Absolutely.

Emyle Watkins: Especially if you're a consumer. Todd Vaarwerk: Mhmm.Emyle Watkins: As we talk about the budget and how it’s included or not included the perspectives of people with disabilities, something that really stuck out to me was the state's addition and focus on increasing psychiatric beds. Our state has moved a far distance away from where we were in terms of institutionalization and having people live in hospitals and live in institutions. But now we see the state adding back psychiatric beds. I believe this year in the budget they've included funding for 200 psychiatric beds. Stephanie, is this in line with what people with mental health conditions want to see as far as where money is going towards services?

Stephanie Orlando: No. We want to see funds going towards community-based services. Right now, if you look where we were 10 years ago, it's hard to believe it was 10 years ago, but we were talking about Regional Centers of Excellence and how New York had more hospital beds than any other state sometimes. You look at a state like California that has a high population and we were just way far above where they were in terms of hospital beds. And the culture has really swung, and I think a lot of that comes from fear and downstate culture. With this budget comes 75 transition to home units. So when the governor and the mayor of New York City announced that this new transition to home units was going to exist, they said that it was specifically for patients experiencing homelessness with severe mental illness or poor communication. And they said for “street and subway patients.” Street and subway patients to get services.

Stephanie Orlando: So you're talking about really trying to scoop up people who are homeless and put them into mental institutions as a solution. So it's not a solution to homelessness, it's not a solution to mental health issues. It's really about how do we warehouse people and get them off the streets, and it really takes us a huge step backward. Really what also goes along with this is that they're going to add in seven million [dollars] to support new guidance on admission and discharge. So the concern from the advocate world is: so you're going to add hospital beds and then make it harder for us to get out of the hospital. So you're going to, again, warehouse people in institutions instead of investing in a comprehensive mental health program that can really serve needs now. It's a band-aid approach to a problem that particularly stems from homelessness. Again, the rising costs of living and the agitated state that people have been in post-COVID, and some of these incidents that have been happening in the New York City subways.

Stephanie Orlando: So this is a reactionary thing. It really isn't based on where the pain points are right now in the system, and we need to have more access to services. Right now, when people, when they identify that they might need some mental support, trying to get an appointment and get into services takes [an] excruciatingly long time. Then we have our CPEP, our psychiatric emergency room that's really overwhelmed. People just get sent there because there's nothing else available and it's not necessarily the right level that they need at the time either, but they're the most readily accessible. That's where you go. That's always open and will always take.

Stephanie Orlando: So this money could have been well better invested into community services rather than the exorbitant amount of hospital beds that we already have. And the other piece that I want to say about this is the lack of transparency around the outcomes of those hospitals. So in preparing for this interview, I was doing research on the Office of Mental Health website trying to find their Balance Scorecard. I had looked at it for a very long time and suddenly I can't find it anywhere. There's no report, currently, on the Office of Mental Health website that will tell you how they're doing in their state-operated psychiatric hospitals, whereas before it was very transparent. They scored themselves, they even at one point I was a part of an advocacy group…

Todd Vaarwerk: And took comment on those scores, didn't they?

Stephanie Orlando: Yes. And told their hospitals where they needed to do better and published it. Whereas as an advocate, I work to include in that scorecard things like restraint and seclusion. How often were people being restrained in hospitals? Was it a high amount, too much? All of those things are gone, that I can find anyway. So not only are they investing in something, but there's not even a clear transparency around how effective that service is. Most of the research says that that isn't as effective as community-based services and really helping people in their homes with their support systems. So this is not at all what advocates were looking for. I think the general public doesn't know what's available for mental health. They say, well, they need to be hospitalized. So when you hear that, that's, I think the governor and this budget was really influenced by people that didn't have knowledge of the mental health system, knowledge of firsthand experience with a mental illness or a psychiatric disability and really missed the mark.

Emyle Watkins: For the general public though, you know I've been covering this for a while, so I do understand where you're coming from, but I think there are a lot of people who would ask: if someone does have a really severe psychiatric or mental health disability where they have trouble functioning independently in the community, what is the community-based resource that could help them to live as independently as possible? And essentially, what is the alternative to the psychiatric beds?

Stephanie Orlando: There are other models that are smaller and even that include peers and maybe are run by peers. So for instance, at Western New York Independent Living we're a part of the Kirsten Vincent Respite & Recovery Center at 111 Maple Street, and Recovery Options Made Easy is one of our partners. They're the lead agency on this site. Kirsten Vincent was their former CEO who passed away, and it was her vision to create this space where there are two respites. So they have a peer-run respite and a very new, just about to open, just got designated all of the stuff they needed.

Todd Vaarwerk: They checked all the boxes.

Stephanie Orlando: And it's a big deal where now it's where people can go that isn't the hospital where they're experiencing a mental health crisis and get more intensive supports. And there's proper staffing that includes peers, but also medical professionals to provide that support. And we have models like that across New York State, some that are totally peer-operated, like the Rose House that's in the Hudson Valley region and have really great outcomes. And if you look at what internationally there is, that is more of the world model, not the New York State model of institutions. When the Regional Centers of Excellence was first being discussed it was said that we were on the first wave of really caring about mental health care in New York, and that at the time was that institutional model. So we built that up, whereas other states, other countries didn't do it that way. They came in later and built it as more of a community model.

Stephanie Orlando: So I think it's just that you do what you know and what you're familiar with, not necessarily what's best for people. And there are newer models that are proven that really help people. There's also things that catch things early, like first episode psychosis, young adults that are experiencing their first psychosis symptoms. Schizophrenia particularly, there's a program here and across the state called OnTrack New York that's specifically geared toward, you're just now experiencing hallucinations, you're questioning your reality, there's a program for you and it's not based in a hospital.

Emyle Watkins: So the state's really been pushing towards, it sounds like, the state has been pushing towards having people who have mental health conditions and maybe they're experiencing a crisis, maybe they commit a crime, they're put into these long-term care facilities versus, it sounds like, advocates who would like to see an earlier community-based approach where we're maybe catching people before it gets to that point and making sure they have the support to live in their community so they don't end up in these long-term facilities or there's not a need for them?

Todd Vaarwerk: Community supports done first and done well will always be less expensive and safer than last-minute or just-in-time institutionalization options.

Max Donatelli: Plus the quality of care and the quality of the person's life is much better in those kinds of situations.

Stephanie Orlando: Yeah. And you have people that have been in this situation where maybe they have committed a crime or are viewed as potentially, we call them “quality of life crimes.” It sounds horrible and that's what it is, where you're affecting someone else's quality of life. Like, you're being loud on the corner of the street and that's disruptive and I don't like seeing that kind of thing. As a community that response is, okay, well, sometimes, “well we need to put them somewhere, they need to go somewhere where they're safe.”

Well, that's not always true. It's not always true that they're safer and have a quality of life and outcomes that that hospital is providing. There are other services that can really do that. And you have people who have been picked up and maybe put in an institution that say, “I would've rather gone to jail because I have a sentence time. I know when I'm going to get out.” With this you could get hospitalized and depending on what these new admission requirements and discharge requirements are, get stuck there for an indefinite amount of time. And we have seen that in our past, in our history in New York State.

Todd Vaarwerk: Remember that New York State has what's called a safe discharge law. No health facility can discharge you unless they know the place that you're going to and your ability to follow the plan of care prescribed by your doctors is going to be safe and effective. And we know for people with physical disabilities who end up in nursing homes, that that becomes a real challenge in terms of to define what's safe. And we've discovered that untrained social workers seem to get the idea that they can prevent me from getting out of a nursing home by saying, the only way we'll agree to let you leave is 24-hour care when you get home, somebody there to be with you every minute of the day.

Todd Vaarwerk: Well, the state's not going to pay for that unless there's a medical justification for that. The facility doesn't care about the medical justification. The facility cares about the legal responsibility of what happens to you after you leave. And the same thing happens on the mental health side of the aisle. So this is another one of those examples where they're reacting and they're creating these beds in order to deal with the temporary problem of people being concerned about street corners and subways. Instead of looking at the long-term solution of where they could go.

Stephanie Orlando: And “subway and street patients,” when are people referred to as subway and street patients? To see that in New York City government language, it just has this idea that we're not people and that like, you're just a problem to be solved.

Todd Vaarwerk: We're a medical case file to be handled by a professional.

Stephanie Orlando: Right. And when you're talking about people that are living on the street, that is not effective in terms of really helping solve that problem and engage a person in what would help them.

Emyle Watkins: And I think a lot of this budget comes back to the quality of life of disabled New Yorkers. And I do just want to touch on, as we wrap up, the 1115 Waiver, the Medicaid waiver, and the funding that New York State was able to contribute to that. I do understand that will go to support a lot of community-based supports for a wide range of people with disabilities, right Stephanie?

Stephanie Orlando: Yes. It's very exciting actually. This is the flip side of the coin on the budget for me. And it's something that New York has been working on a long time. One of the things that really was highlighted for me is the new social care networks that are being developed. So these will provide opportunities for community-based organizations which provide social determinants of health services, so those would be things around education, housing, transportation, education, employment, all these things that impact your health. So social determinants of health. We're going to be able to really offer through the community-based organizations that are already providing some of these services, Medicaid billable services.

Stephanie Orlando: So let's take a food pantry for instance. They will now have a way that they can work with the social care network to have a new funding stream to help pay for certain people that are eligible for this to have their food paid for so that the pantry can serve more people and bring in more food. So it just creates a lot of new opportunity and these social care networks, their role is to make it easier for those community-based organizations to access this money. So if this transformation goes as it's envisioned, then it'll take it out of just like you have to go to these four providers of Medicaid services, to, you can get all this different support in your community and there's different funding mechanisms than just grant dollars or foundations or the specific government funding that's for that service.

Todd Vaarwerk: The listeners might not understand what a waiver is, right? The number doesn't necessarily matter. But when you refer to a waiver, what it is is that the state is saying to the federal government, “we have this innovative idea that's going to reduce the overall cost of care and keep people in the community.” That's what the 1115 Waiver is. And the feds say, “hey, we really like that idea, we're willing to give you or discount your use of state dollars in placement of federal dollars.” So the waiver is actually going to bring in, over the next four years, about nine billion dollars in federal revenue on the changes in the split between the state and the feds. So the ability to be able to create that kind of agreement with the social care network is a really important step.

Stephanie Orlando: Yeah. And we didn't invent this model. We actually took it from another state and made it ours.

Todd Vaarwerk: We stole it!

Everyone: [Laughter]

Stephanie Orlando: So yeah. And the 1115 Waiver itself isn't new. It's just this construct, this application of saying, “we're going to want to use these government funds in a different way,” that's what's new, and it is going to be a huge change for our system. I've heard major leaders in our community say that this is one of the biggest changes that we will have had in decades, and it will have a lasting impact for a substantial amount of time. The main thing is that this is just the beginning though. So we have a couple years, we're going to see how it goes, and then we have to do another waiver application and we can tweak things wherever they were off on this first model and hopefully it will have the stay power because there is that initial launch period plus a new application to then tweak whatever was not working well in the first round.

Emyle Watkins: And it sounds like that's a very hopeful part of the budget. I guess I want to end on: how does everyone in this room feel about the budget? Do you feel hopeful? Do you feel concerned? Where do you stand Todd?

Todd Vaarwerk: Well, I got to tell you, for me the budget's a mixed bag, and we got a lot of people to thank for the limited things we were able to get. But I say the same thing in this budget that I said about the last one. At some point the departments have to come out of their individual conference rooms in proposing their budget proposals and come and talk to us. Very rarely when it comes to budget time, do they come and they say, “look, how do we fix this?” Right? And we know it can't be done in budget time because in 90 days you're going to make a decision about trillions of dollars. Let's think about that. But what I want them to do is to come out now and talk about next year's budget or talk about modification language if something isn't happening now. I am cautiously optimistic because in everywhere we were able to advocate, we got a way to get into the conversation, but hopefully we can build on that so that they're bringing us into the conversation in the future.

Emyle Watkins: Stephanie, how do you feel?

Stephanie Orlando: I also am very mixed on it. I think my initial reaction was pretty negative though in the sense of things like the 1115 Waiver, kind of, to me were outside the budget talks. They were happening, a long time, it took a lot to get that application in to the federal government and have them dissect it and work on it. So that to me was like a side thing. And then the rest of it came out, and I just felt like this was a lot of band-aid, flashy approaches that sound good, but don't really think out unintended consequences, don't really solve major issues that are really impacting our services. And a lot of that does stem from the workforce crisis and the lack of pay and really investing in these community supports that do take time to build up. We're great at funding pilots here and small projects, but not sustaining the services and researching them to prove that their outcomes are good, and then transparently putting those outcomes out there for the public to see.

Stephanie Orlando: So to me, I'm excited about some of the initiatives. I think it's important to see all of the things that are in there for young people and youth, especially with COVID and this generation really being impacted. There's some great things in there. I was excited, not to go too long, but I had helped the Office of Mental Health gain input from youth last year in a statewide forum and one of the things that they had asked for is in there, which was around more social media support and another thing that they asked for, more peer support. So I do think that some things were listened to, especially in the youth world, but I think a lot of these other things that were put out really were more reactionary than really truly engaging all the parties and stakeholders and finding more valuable solutions.

Emyle Watkins: And Craig, how do you feel about your future with this budget?

Craig Donatelli: Well, actually, you know Todd said something too, and Stephanie, when I say that we have a life. We have a life. We have, because why? Because I am… I want to… because that is part of our story. Our story. Our story is to take the future and grow with it. Because that's me, because I am the one who, I will take the budget to the governor and tell her that I care for people. I care for people on the streets. I care for them, because why? Because I work with them at [day] program, I work with them. I care because I go to the Heart [for the] Homeless, as part of it [day program], because I'm there to be a good volunteer work[er] there. And I'm there for them, and I care for them. Yes, I do. And right now, our [day] program, and the house, we want to… they… remember when she said about, when she said about day habs [day program], I would say, no. No, because why I say no to that? Because I have a day hab. I have a home that I can take care of people like with me, because we have staff, we have more staff.

[Note: “Day program” and “day habilitation,” or “day hab” for short, are often used interchangeably to describe day services for people with intellectual and developmental disabilities. In this quote, Craig is explaining that as part of his day program, he goes to Hearts for the Homeless where he is able to support people who are unhoused through volunteer work. He’s explaining that he would tell the governor that he cares about the people he serves in his volunteer work, and he also wants to ensure his day services and home, which are supported by direct support professionals, continue, as all of these issues are impacted by the New York State budget.]

Emyle Watkins: So Craig, it sounds like you feel hopeful about the future because people like you and Stephanie and Todd are speaking up about these issues as people with disabilities and saying, “our lives matter, the quality of my life matters.”

Craig Donatelli: Mmmhmm.

Emyle Watkins: And Max and Joyce, how do you feel about the budget?

Joyce Donatelli: Well, the budget, I am very concerned about it, but I'm staying hopeful because at least we didn't get cut because that would've been much worse. And so I think we have to hope for the best and just keep trying to do what we feel that we need to do to try to make things better, even on a personal side.

Max Donatelli: Yeah, I think I feel, probably more hopeful than that. And I think part of the reason is I think that there have been efforts to really try to increase funding in a lot of the right areas. However, I think that, someone was mentioned too, is there still is a siloing effect. As a parent, I mean, I would like to see services be a lot more person-centered and a lot more where you really look at what people need, what they need, and certainly getting organizations from out state certainly worries me for the future. We're really concerned, what's going to happen with self-directed services? There's some questions as to how that is going to develop and certainly as parents and as Craig is, you know, who is receiving those services, we want to make sure that our voices are being heard. And as these things start to develop and not having them developed in conference rooms, as was mentioned earlier, that they're developed in an open forum where they can get input from the people that are directly affected by it.

Max Donatelli: And certainly for the future, we're very invested in the disabilities area, but certainly we're concerned about the mental health area as well. As well as those that have alcohol and substance abuse issues. But again, it's got to be seen as people and not as numbers and not as case files, but as people. And I think those are the kind of things that I think as a system, we need our governmental folks to recognize that, so that I think we will have a more hopeful future for Craig and for others that really need these kind of supports, and will need those kind of supports lifelong.

Emyle Watkins: Well, thank you all so much for taking the time to go into such great detail about the budget with me. I know it's going to help so many people understand it better and understand how it's going to impact their lives. So thank you.

Todd Vaarwerk: Our pleasure.

Stephanie Orlando: Thank you.

Max Donatelli: Thank you.

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